I don't know how people can go on like this for years! I have been dealing with my worst part of this dreaded disease for about two months and feel like I am going crazy! My brain doesn't want to co-operate with my body and I do not even feel like myself. I can't think straight and can't do more than one thing at a time now and burn food because I try to do two things at once. I feel like I am moving in slow motion. I get cranky with my family and want to be left alone just to crawl up in the bed and sleep! The only time I am not hurting is when I sleep and even that is hard to get. My head feels like it wants to explode and pain reliever does not work much. My wrists hurt bad and my neck and shoulders and body ache. I do not even have as many problems as some people here but I am scared to get official diagnosis from rheumatologist and I do not want to have to be dependent on so many drugs to help control my body! I never have liked to even take medicine for a cold and now have to be putting three different drops in my eye. I am afraid they will find all kinds of things wrong with me and will then need to be seeing so many doctors all wanting to give me tons of pills. I am sorry to make anyone feel bad when I should be helping encourage instead of complaining. I have all these things going on and reading a lot more that can happen and I getting really scared. Trying to stay positive and keep the faith but just letting things get to me now..

38 Replies

Sorry you are in such a bad way. To clarify - have you seen your GP or even a rheumatologist and are you now waiting to hear back from them about medication for lupus?

I completely understand the fear of the unknown but, unlike you, I really want a diagnosis because otherwise I fear that living with these nameless symptoms will become intolerable. So what can be worse than this miserable uncertainty and pain that you are experiencing presently?

Please do go to the doctor and see if they can help you by giving you information that may well be less scary than what you are reading online. I say this as someone who has had severe reactions to many drugs including four immunesuppresants and yet still would try others if I felt they might work to lessen my symptoms and control the progress of the disease. I felt like you when I was first diagnosed with RA and read about the awful things the disease can do and the drugs that are used to control it. This was nearly five years ago. Now I'm looking to be rediagnosed because my symptoms have changed direction. I'm waiting impatiently for answers.

So be brave and tackle your fears head on by seeing your doctor. Whatever it is you fear it can't surely be worse than this present awfulness of uncertainty can it?

Most of the drugs we are put on are very carefully monitored and if you react badly to them then you can always stop taking them - apart from steroids and some of the antidepressants and anticonvulsants used for nerve pain sometimes - which require you to taper off more slowly.

No one can force you to take medications but at least if you know what is causing your symptoms you stand much more chance of managing them yourself.

The uncertainty of living with a whole battery of unbearable symptoms while trying to cope with life is a kind of nightmare. Many of us have been there for years in trying to get a diagnosis, once that is discovered the medications can bring back your life again, or at least some of it.

Sadly in life we don't know who will be doled out what, but use those medications and treat them as friends.

Keep getting support on here while you are on the journey if you don't yet have a firm diagnosis and afterward. This forum is a life saver, and has been for so many of us. There are folk on here who have inspired me when I was really despairing and got me now in a much more positive place .

And yes, so have many medications. But you will be guided and monitored to use them. Your greatest friend is a good rheumatologist and hopefully a good GP.

The worst place you are at is just now, because as yet you perhaps just don't know what is going on,or else are newly diagnosed and feeling overwhelmed by it all.

Keep talking to others in the same situation and let your friends and family know how hard it all is.

For me that was one of the most difficult things, I always could cope with life and didn't want to have to explain to others the desperate struggle I was going through everyday with those demanding mental and physical symptom which were invisible to others.

My gp did the lab work that showed positive for lupus. The eye specialists agreed with the test result as my eye issues they said point to lupus causing the inflammation. I have not seen a rheumatologist yet. I have been reading the many posts on here since and feel I could have written them as I am experiencing the same symptoms. I guess it hadn't really hit me so I was trying to take it all in slowly but yesterday was a bad day for me. Sorry I was so bummed but I was hurting terrible and especially the headaches which I am not used to and never seem to get relief from it seems.

Don't apologise please you are having a horrible time and at a horrible stage too - this is what this community is for! As I've said I remember the misery I went through when my GP diagnosed me with RA and referred me and then I was just left to deal with it all by myself - no one understood - couldn't use my hands or wrists at all which ruled out driving and working as a artist - my job. It was awful and I used to hide in my room from my sons and husband and was terrified my hands would deform with erosions and I would be wheelchair bound within a year.

None of this has come about of course - probably partly because of the drugs I was put on. But my symptoms are now in my nervous system, dizziness, possible organ involvement etc so I find myself still unwell, in pain, no longer on treatment etc, awaiting possible rediagnosis etc.

However it's been five years and at least I've had plenty of time to get used to the idea that I need to pace things and take each day as it comes. Take care and let off steam here whenever you need to. Tx

RA mean rheumatoid arthritis I take if if so has anyone told you that the deadly nightshade family is bad for all arthritis? Potato and Tomato main ones plus chillies etc. I gave up spuds and loved my chips still have to cook them for the boys - but tried it because my fingers were bent at middle knuckle painful and thought I would end up unable to do much - clumsy still a bit but within 3 weeks fingers had straightened out and now around 3months down the track not dripping things can open stuff more easily - still need the knife sharpener for ring pull tins but not so clumsy either dropping things so big help and knuckles are almost back to normal looking were enlarged rough skin and they are perfectly straight!!! Worth giving up chips for!

those I have told and got feedback from all say same - great help and hands a lot better or completely in some cases.Depends how bent they had gotten. Time for bad longer naturally. I have osteo but fingers were starting to look like claws coming as seen in bad Rheumatoid.

My reply has disappeared so I will try again! Thanks for suggestion but my rheumatoid disease has left my hands now and is more systemic these days, which is why I come to this community often now. But for what it's worth I've tried the food group elimination you suggest when it was bad in my hands and wrists and it made no difference.

If it makes such a difference to you and those you know then it most probably isn't RA at all but might be gout or osteoarthritis - which are more affected by certain foods I believe. RA has existed for centuries - and is roughly the same prevalence the world over - and yet diets vary greatly across the globe. And also, as with any systemic autoimmune disease, if food elimination could cure RA I think sufferers and doctors would have discovered this by now. Worth knowing about in relation to gout though.

I saw the video about the guy who did only juicing for a month and was able to get off medications for immune diseases he had and was cured. Just wondered how true it was and if it would help at least calm symptoms if not take lupus away.

I think this might work for people who have a mild form of RA or UCTD or SLE or who have an unhealthy lifestyle to begin with. But a lot of people I've come across with these diseases have tried all the juicing and diets and don't smoke and do take regular exercise already but still have active autoimmunity. I'm guessing it depends how robust the diagnosis is and how severe the autoimmune presentation.

However for some people alternatives/ complimentary methods do seem to work. After all our immune systems are very susceptible to the effects of stress and other psychosomatic factors too so positive thinking and believing in natural remedies - or having no other choice because of poor drug toleration (me)- might lead to remission for a lucky minority. I was told about someone who had tried everything for their supposedly aggressive RA and finally found turmeric tablets made a huge, life changing difference to him. But this was a second hand story and turmeric pills just gave me more reflux.

Losing weight if your BMI is too high will always help with arthritis so juicing might work for this reason for some people too - especially if your previous diet has been poor?

I would settle for a diagnosis that made sense to me and also for a new treatment to try. Methotrexate and Hydroxichloraquine kicked my RA into remission - but the other connective tissue symptoms are even worse for me now so I'm waiting to see what my new rheumy advises. I honestly fear being left in limbo, undiagnosed and untreated the most. I do think drugs can be brilliant if only I could tolerate them. Many I know have been able to return to their lives because of these medications. As you say if the suffering is bad enough we will try anything.

There are many stories of people trying radical diets in order to gain some better disease control. I know a lady who conquered severe Lupus and then severe, near fatal, LEMS with diet, lifestyle and massive determination. She has written a book about her struggle, I bought it and it's truly inspirational. From wheelchair to marathon runner and no drugs!

At present, there is no cure for lupus. Some people with lupus may find certain a certain diet and lifestyle change will help them to control their symptoms and they may even experience a period of remission. It should be remembered that lupus is different in everybody and what works for one person could potentially be harmful for another. Before trying any alternative/complementary remedies or radical changes to diet, please discuss it with your consultant.

Im sorry u feel so bad, u r doing good to express ur feelings. Others can relate to u. Please try and hang in there and get ur dr to explain this dreadful disease to ur family. Continue trying to pray for relief.

I don't think how you are feeling is unusual, try not to beat yourself up too much, the anxiety and stress will just make it worse. Many of us have been through those feelings and often years prior to getting a diagnosis. What you outline is very common for many of us lupies, wading through treacle and being scared. Use your rheumatologist and their nursing staff for support and information. It can take a long time to adjust, and it is like grieving....good luck

This site gave me so much support directly and indirectly when I was at this stage 3years ago...I still have a wide range of medical issues but have a more positive mindset, knowing others really understand is a rock...

I send gentle hugs ((💜)) and hope you get the support you need from the medical teams and that you find a positive support network

You've got some great replies, ac....I felt sure you would when I read your powerful post this morning. you've told it "like it is", from the bottom of your heart👏..by putting feelings we all share into words this way, you make a big diff to me, for one: you've given rise to the wonderful solidarity of these beautiful replies + you've reminded me it's really important we avoid just looking at our health issues through rose-tinted glasses...yes, it's important to be positive, but it's no good for anyone to deny the darker side of all this: better to admit how tough all this is, but remember we're not alone...that here on forum, at least, really good advice and understanding is at hand, making the darker stuff more bearable. Plus on here there are folks who know how to see the black humour in all this....I'd have an even harder time without them around to remind me that laughter is one of the best meds...even when all we feel like doing is crying!

It has really helped me to be part of this group and the humor part like you say does help. I just had a rough day yesterday and just feel useless to my family feeling so limited. I was not very active to begin with but I am unable to go small stuff frustrates me. I been trying to stay positive and I guess just had a meltdown yesterday with feeling bad. Thank you for the kind and encouraging words.

🌻🌺💐😜😘these passages of feeling even more limited than usual are very tough, no 2 ways about it! what helped me to 'let it be" during one of my worst & most long, drawn out invalid passages was long distance reiki: i'd just lie on my bed or sofa and be quiet while my friend sent reiki through the airwaves daily at a time we'd agreed. hope that doesn't sound too weird. i was totally skeptical, but my gosh it helped me relax, keep calm & carry on without feeling quite as upset about letting my family down, being a burden etc...and oddly enough the result was that my family became even more loving & supportive. i wonder if you have a local healing group? if you do, there is likely to be a member who does this sort of reiki...often they require no fee (my friend doesn't).

and please do continue let us know how you're feeling: venting is vital to our emotional & physical & spiritual health....well i think so...and remember: your deeply moving post and the discussion it got going will be helping loads of us who don't feel able to vent on here themselves: I call it vicarious venting!

XOXO

PS am sure you've let your GP & rheumy know how tough things are at the mo...just so they could review your treatment plan to check there isn't something they can tweak to help you a bit more...yes taking meds in quantity is a massive drag, but can really help: I'm a good example

We have a prayer group at church and my family are all praying for me so that helps. I totally believe in the power of prayer just my human side lets me down at times lol. My husband starts work again on the thirtieth of this month so I have to wait on that for insurance to start then and I can go to doctor.

I empathise completely with you. You put into words what I'm also going through. My first appt is tomorrow, this after three rearranged appointments by the consult. Now I feel anxiety and apprehension at the prospect of a future on meds. I've conned myself into believing that I can control this disease with wheat and gluten free diet but certain symptoms persist. Let's stick together and support each other. Say what ever you want to here. We're all listening x

I also have been trying to find alternative food/juices or supplements/herbs to replace medicines I hear they could put me on once diagnosed. Not even sure where to start with all that though. Let us know how it goes for you. Hugs

You could start with cutting out wheat or even gluten - one thing at a time and eat only wholesome, unrefined fresh food as much as you can? This and gentle exercise helped me a lot and made me feel more in control.

Great stuff! I found my teenage son's smoothie maker the other day and have been juicing with it ever since. Only problem at is this time of year I crave soup and hot chocolate (green & blacks with sugar free almond milk) - not as anti-inflammatory as raw fruit and veg I suspect. Tx

I read dark chocolate is healthy and almond milk is too so not too bad. We buy frozen and fresh fruit to make smoothies but I just don't drink them often. I need to get into daily routine with juices and smoothies. I read it is very good for a healthy immune system.

Just to add a bit more to the others! I started my low dose steroids a few years ago and gradually improved so decided like Chrissy above that I could sort it out with diet myself.I think we all want off those pills!

Inevitably after reducing the steroids too much I got worse again ,despite my antiinflammatory diet , and had to go up the dose again.

Now I am hoping to tolerate a new drug in three weeks.

You have to work with the medicines, there is no quick fix, but a good diet will be excellent for you in helping your body to heal.

As everyone says, you have every right to feel the need to shout out in despair every so often and most of us do. In fact it helps the rest of us to see we are all the same ,and our emotions felt over living with chronic illness are a roller coaster.

Hi ac, nothing I can say will make much difference right now. I'm sure you have read many stories on here, people have flares and low times but you do learn to live with the condition because its just a new way of life. Until you see your consultant waiting can be worse than knowing. Once you know, it takes time to adjust, with medication learning to paces yourself, but your cognitive ability will improve. Worry makes it worse. Give yourself time, little things don't matter, you do. Let us know what happens.

I am just so used to being the one to take care of my family and always spoil them doing little things. I feel I am being lazy but I really am sleepy and tired, even when I sleep, it doesn't seem to help much. My balance is off so worry about falling over. I don't drink but look like I am drunk wobbling and going sideways when I walk lol. I can't read much or do little crafts or sewing even. I burn food now if I try to do more than one task at a time. I have always been able to multi task and make a big breakfast or dinner at one time so I get distressed now. We have been learning to eat cereal for dinner now and my husband jokes and just takes it all in stride. I do enjoy getting catered to though lol

It looks like you've got some great, supportive responses here. Your feelings are very understandable in this situation. It is scary to face a diagnosis of a chronic illness. Perhaps you could ask your GP for referral to counselling to help you express and manage the feelings you are having and come to terms with any diagnosis you may be given?

I understand that you don't want to take any more medication, but hopefully it could help to alleviate some of the symptoms you are experiencing and also prevent anything from potentially getting worse.

Please don't feel bad about sharing on this forum. It is here for people to offer support and information for those in need.

Thank you. I will be seeing doctor first part of December and hopefully get some help. I guess the reality of it all just started getting to me and I having trouble absorbing everything I have been reading about lupus.

I know excatly how you feel all I do is sleep my self got my self in a spiral of sleep mode and depression nothing is working not even spending time with my family and all I'm doing is pushing them away god help us. I hope you and I find some sort of comfort.

I do feel bad pushing people away so it is good if they are understanding on that part. I think what causes the depression is being in pain and the exhaustion where we seem to not be able to get enough sleep no matter what we do and we feel no one really understands what we are going through. Hope we can feel better soon. Sending hugs and prayers your way